Friday, October 23, 2009

Something's Always Wrong

Now that I'm cleared to try injectable fertility meds, I'm anxious to get started. I just need a cyst-free ovary! I've had pain, though, and gone on the pill. Thought I'd better get it checked out, so today was the first time I've been to my new gyno since the initial consult. I was pleased that my situation was handled expeditiously, in stark contrast to how things were managed at the last office. Got the exam, ultrasound, results, and recommendation all in less than an hour's time.

I had hope going in because there has been almost no pain at all for three days. A good sign! And the doctor said he couldn't feel anything amiss. Another good sign! Then came the just-in-case ultrasound and hope was crushed once again. Surprise! Another cyst - this one a whopping 6 cm, and it looks like it may have sprung a leak. The doctor said to stay on the pill continuously for another 6 weeks and then we'll check on it.

Now I'm a nervous, paranoid wreck. What if it twists or ruptures? I don't dare to go running, which is a serious loss because the endorphin high is all that keeps me going sometimes. And being on the pill just KILLS me. How can this nightmare ever end happily when we so rarely even get a try at pregnancy? Also, I'm sorry to admit that being in pain so much of the time makes it really hard to be a nice person.

In order to ease my pain (and his) hubby recently purchased the Hitachi Magic Wand Massager and it is gooood. I put it on my belly and it temporarily kills the pain. 

Sunday, October 18, 2009

New Stuff

Just a note about some new stuff I just added...finally! It took a looong time to figure out how to do it, since I am technologically impaired, but I got my medical records added under "Case Studies" on the sidebar. I removed all names and locations, but they are otherwise unchanged.

In addition, please note the way cool websites listed below "Blog List". The Stirrup Queen's List of Blogs (aka "the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer") is an excellent resource for all things infertility and loss related. Also, please consider making a fun footwear donation to Fertility Socks!

Saturday, October 10, 2009

A Tangled Web

Oh what a tangled web we weave
When we are desperate to conceive


Apologies to Sir Walter Scott. So, the consult with the RE was AWFUL. Hubby was confused about where to meet and missed the whole thing. He paid dearly for it (sorry hubby!).

Usually doctors are the only ones who give us any hope, but this one didn't seem too hopeful and was clearly frustrated with my indecisiveness regarding our options. Apparently she thinks life-or-death guesses should be easy. She's ok with us trying Clomid one more time if we want to, but we don't really want to. Instead, she said to try very low-dose injectibles next time (Follistim). She's also fine with us skipping to IVF. Much as I wish IVF were a viable option for us, hubby and I agree that a $12,000+ a pop gamble is just too much given my very poor track record even when I do get pregnant. Also, having only one ovary makes it a risky gamble even without the loss issues.

Guess I'll try Follistim. Why not? We have a little $ left in the insurance pot, might as well use it up and hope I have a shred of fecundity left before my lady parts self-destruct.

And speaking of self-destruction, it seems to be continuing even on the pill. The pain is making me lose my mind. Endo is devastating not just because of the physical pain, but also because of the hopes it destroys. For now I'm relying constantly on my Instruments of Torture Reduction - heating pad, hand warmers for portable heat, cold packs, tennis ball, pain killers, and best of all, the portable rechargeable massager that I lay on my belly at night.


There have been so many horrible decisions to make over the last few years, and each of them leads not to a resolution, but to yet another horrible decision to make. There is so much at stake. Each time we're forced to make a choice the situation is more complex and the process more tortuous. There are so many factors to consider : medical advice, physical and mental limitations, financial barriers, religious issues, ethical questions, and so much more.

Someday, somehow, there will be a resolution of some kind, though I know I'll never end up where I wanted to be or with the family I wanted to have. But I want to know that at least I tried everything I could, instead of living with regrets and "what if" for the rest of my life.

Thursday, October 8, 2009

Curses!! Foiled Again!

Once again, my plans have gone awry. About the only thing I can plan on anymore is that I can't plan on anything! Due to uncharacteristically long-lasting pain, I am forced to give up on the "natural" cycle + Ovidrel idea. I called the clinic a couple of days ago to ask if it was too late to start the Pill. It wasn't, and either because of the Pill or by coincidence, in two hour's time the pain disappeared almost completely. To the great joy of hubby and children, I am a nicer person now than I was earlier this week. But I'm still VERY upset at my renegade ovary!

That ovary has done nothing but cause trouble since its partner was removed during laparoscopic surgery nearly two years ago. Prior to that, it had never developed a single cyst, never caused a moment's pain, or made trouble of any kind. It looked like the ideal candidate for increased responsibility. Big mistake.

Evidently, it resents having to do the job of two ovaries. Despite the fact that I've given it several extended vacations (on the Pill) it still exhibits a very defiant attitude and suicidal tendencies. It requires constant supervision and the encouragement of powerful drugs just to maintain a minimal level of function. I keep having to use harsher methods to bring it under control, alternately using the Pill and hyperstimulation drugs.

Still, dealing with the pain, infertility, and other trouble is vastly preferable to the alternative of losing it, which would cause sterility, higher risk of heart disease and osteoporosis, pain, depression, and instant menopause complete with hot flashes, mood swings, etc. So I will continue plying it with drugs and praising it incessantly when it actually produces decent follicles without producing cysts.

In other news, our consultation with the RE got moved up to tomorrow instead of the end of the month! We'll see what the game plan is after that.

Wednesday, October 7, 2009

Statistics

Statistics . . . sounds riveting I know. Just thought it would be interesting to run a few numbers. It's been a long time since I was in a statistics class, so if I get the numbers wrong and you're a math whiz who can correct me, feel free.

If you've had a late pregnancy loss due to an umbilical cord problem, you've no doubt tried to find the answer to this question: What are the odds of it happening again in a subsequent pregnancy?

First, let's review some basic information and figures we'll use:

Types of umbilical cord accidents that can lead to pregnancy loss - Abnormally short cord, abnormally long cord, hypercoiling, hypocoiling, single umbilical artery, nuchal cord, nuchal loop, torsion, body loop, true knot, marginal insertions, velamentous insertion, vasa previa, cord prolapse, constriction, and monoamniotic twins

Frequency of late pregnancy loss - The odds of a second trimester loss are about 3% and the risk of a loss in the third trimester is less than 1%. I'm going use the 3% second trimester rate.

Late losses caused by umbilical cord accidents (UCA) - According to Dr. Jason Collins, 20% of all stillbirths are caused by UCA. That means the risk of late pregnancy loss due to UCA is .6%.Now we're ready to run some numbers. First, let's assume that UCA is totally random - just "bad luck". Every woman would have an equal chance (.6%) of suffering a UCA with each pregnancy progressing beyond the first trimester, regardless of her past history. [PLEASE NOTE: Since it's impossible to pin down an exact number for either the frequency of late pregnancy loss or the proportion of them due to UCA, I've used numbers on the high end of the studies I've found. I'm being pessimistic here and the real chances of a loss or losses are likely even lower than indicated by the numbers below.  Remember, we will only consider pregnancies that are beyond the first trimester.]

Risk of losing one pregnancy to UCA: 1 in 167
Risk of losing two pregnancies to UCA: 1 in 27,889
Risk of losing three pregnancies to UCA: 1 in 778,000
Risk of losing four pregnancies to UCA: 1 in 605 million

According to these numbers, you are more likely to be murdered (1 in 18,000) than you are to have two late UCA pregnancy losses. Your risk of being struck by a lightning (1 in 576,000) is much greater than the chance of having three late UCA losses. And you're more likely to be die from a shark attack (1 in 300 million) than have four late UCA losses.

"Bad luck", indeed. It would be wonderful if the numbers above represented the true risk of UCA loss recurrence, but now assume that late losses due to UCA are more than just random "bad luck".  Let's consider the research of Dr. Jason Collins, which puts the UCA recurrence rate at 1 in 7.  Keep in mind that this figure only means that there's an issue with the cord, NOT necessarily that it's a fatal problem.  But since I have no research on the proportion of affected babies who survive, Ill run the numbers using the very pessimistic 1 in 7 figure:

Risk of losing next pregnancy to UCA: 14% or 1 in 7
Risk of also losing a third pregnancy to UCA: 2% or 1 in 49
Risk of also losing a fourth pregnancy to UCA: 0.3% or 1 in 343

Even when using this frighteningly high recurrence rate, the odds are still very much in your favor for a successful future pregnancy. But what if for reasons unknown, some women (like our case study moms) have even worse odds, perhaps because of a genetic or physiologic condition, that gives them a dismal UCA loss rate of 50%. In a group of 100 such women, we would expect to see the following results if each woman had four pregnancies going beyond the first trimester:

6% of the women would have four babies and no losses
25% would have 3 babies and one loss
38% would have 2 babies and two losses
25 % would have 1 baby and three losses
6% would have four losses

37.5% would have two losses in a row
12.5% would have three losses in a row
6.25% would have four losses in a row

So, if you've lost a baby to a UCA, should you try again? We here at Cradles and Graves say yes - but demand specialized care! And let us know what the outcome is.

Friday, October 2, 2009

An Adventure on the Black Market

Oh what a depressing week this has been. I'm very sorry for hubby and the kids - I can hardly function at all! I was already feeling awful over my brother's recent death, and then I got (surprise!) a negative pregnancy test on Monday. That was try #4 of Clomid and I know this time the IUIs were well-timed. We did two this time just to make sure, so that's several hundred dollars extra down the drain. Our lifetime limit of insurance coverage for infertility treatment is disappearing rapidly, with nothing to show for it.

My RE (that's reproductive endocrinologist, for the uninitiated) has OK'd continued Clomid cycles, but I am extremely pessimistic about my chances despite the positive pregnancy test I got on the first Clomid cycle. Clomid does seem to be making my endometriosis flare up, and what has me especially worried is the timing of it. I get a painful endo flare-up five to seven days BEFORE my period. For the 2-3 days before my period and during the period itself I have almost no pain at all. Besides being strange (endo pain is typically during and maybe just before the period, due to bleeding endo lesions) I am very concerned that this will prevent implantation even if I do manage to conceive.

Yesterday was cycle day one, and since I can't have a consult with my RE until the end of October (grrrr!) I am forced to choose from four unattractive options with, as usual, absolutely no sound medical advice or inspiration to help me:

1) Do nothing and risk getting a functional cyst. This has happened quite routinely over the last couple of years whenever I try to have a "natural" (meaning drug-free) cycle. These cysts are painful and can take a long time to go away. Also if they get really big I run the risk of more surgery and even loss of my sole ovary. Not attractive.

2) Go on the Pill. Again! Sit around in Waiting Mode. Again! Makes me want to scream. Not again.

3) Do another Clomid cycle. This would deplete our funds by $1000-$1500 and I have little expectation that it would work. But there's always that little glimmer of hope that's hard to turn my back on, especially since I'm turning 34(!!) next month and the clock is ticking REALLY LOUD. If only I could talk to the RE about any possibility of dealing with the endo flare-up. Maybe there's some way short of surgery that my odds can be improved on Clomid, but until I find out if that's possible, it's hard to burn through that much money.

4) Do an almost natural cycle, meaning no Clomid, no ultrasounds, and no IUI. Just Ovidrel to hopefully prevent my one hopefully normal follicle from becoming a cyst. I think this will work because on "natural" cycles I get no LH surge but often get a cyst. I'm hoping Ovidrel = LH surge and normal ovulation = no cyst. We'll see if a Clomid-free cycle could also mean a less dramatic endo flare-up. Or maybe no flare-up at all. Maybe we could even get pregnant by taking a step back on infertility drugs! Maybe we could get pregnant by [gasp] having sex! Maybe I'm delusional and have lost my mind at last!

You'll probably think so after you hear the rest of the plan. So ...the infertility clinic is willing to have me do just the Ovidrel, but only if I go in for cycle monitoring as usual. We'd still be spending $800 or more but with virtually no chance of getting pregnant. Doesn't strike me as an attractive option. Things were looking pretty bleak, but then I peeked into the dark underworld of fertility meds, the Black Market, and found someone very nearby willing to sell me a leftover Ovidrel syringe for $30! I met up with her today and now I have Ovidrel in my fridge. Here's hoping that she and I both get lucky by stepping back on the infertility treatment.


That's the plan for passing the time between now and the end of October when we can talk with the RE about our options. In the meantime, we figure we may as well start the adoption paperwork. Hubby's in charge of it because the whole thing is just too damned depressing. Our hopes of ever having an even partly biological child seem very dim indeed at this point.

I'm betting that when we finally get to talk to the RE, she'll suggest IVF. It could help get around some of the endo issues, the POSSIBLE genetic issue (donor?), and of course there would be Lovenox shots daily to get around a possible but probably imaginary clotting issue. An end run around three of the possible baby killers could be a tempting prospect, financial and physical costs notwithstanding.

After looking at the adoption information again, I must admit that stabbing myself with dozens and dozens of needles does begin to look attractive in comparison to the drawn-out and brutally invasive torture that is the adoption process. Yes, IVF is also brutally invasive torture, but I've grown accustomed to needles, surgery, spending a good deal of time in stirrups, and having foreign objects shoved up me. With IVF, it's the financial risk and the risk of another crushing loss that scares me.